Perspectives of CG from a Family Member (Tertiary Caregiver)

It is my loved one you care for and I appreciate you being there. I especially want to thank you for being consistent, for showing up on time and day to day. It makes a difference as it alleviates the stress and anxiety on the primary caregiver who has the 24/7 job of worrying about my dad/mom/sister/brother/etc. That is helpful to all of us in turn.

I am the one who hears how my loved one does in your care. Believe me, I also hear how you are doing on the job; whether you are on time, talk too much, are attentive, compassionate, follow directions –or not—I hear it all. I help coordinate your schedule and am a sounding board for the everyday minutiae that is so important to a smooth day in the household of dementia. You are on the front lines, I know; not only doing the physical exertion of caregiving chores but also caring for others there. It is not an easy job.

I am the health advocate for my loved one. I do research on medication and techniques and try to provide input to make things easier and address issues as they arise. I try to attend doctor appointments and type up detailed notes for the physician if I cannot be there in person. When I do come to visit, I have a list of chores that need to be done and maintenance items, too. I rarely have my own vacation, and the situation has taken a toll on the entire family, including mine.

I have frustrations of my own. I am the sibling who talks to those who indirectly hired you through your agency—my loved ones-- multiple times a day. I am contacted first if there is an issue. I keep my phone on day and night. I shoulder most of the communication to siblings who may be in denial about the situation—from what needs to be done to what cannot be said out loud. It would be helpful if they were more involved, but requests fall on deaf ears for assistance – whether time, money, visits, opinions, etc. I find that incredibly sad.

I try to think of ways to care for all of you while preserving the dignity of each of you individually. It is a constant juggling act, and as you are aware, things are always changing. I guess you could call me the Ambassador to Dementia. I am not sure how I got this position, but I know trying to help and staying involved is the right thing to do.